I have the usual rashes - chest, torso, arms, and legs. It is worse when I've been in the sun. BUT I am kinda embarrassed to ask and I've never read anywhere, but does anyone have problems with skin problems in the female areas? I also have sjogrens along with lupus. My gynacologist has ran every test imaginable and comes up with nothing. I don't have it all the time, just flares up maybe a couple times a year. It is terrible at those times. He is at a loss, and just says maybe it is a cronic skin disease like the phoriasis I have on my hands. Believe me, it is nothing like that!!
Hi. Dr. Wallace writes in his hardcover about mucosal ulcerations, which can affect mouth and nose, and in rare cases, vaginal area. (Not sure if this is quite the same, though...?)
I had external sores 2-3 times yearly in the 5 or so years before being Dx'ed. But by that time I was also battling various urinary/kidney troubles (forming grit, frequency, etc.) among all the other weird things going on.
I never did find out the underlying cause. Ob/Gyn presribed a topical called Lotrosone (spelling?) This was only one of, oh, about "umpteen" things that stopped happening to me after starting on Plaquenil---so one really has to wonder if it was lupus-related. Anyway, good luck! Vee
Welcome to our brilliant forum. I to have Sjogrens alongisde my SLE and I get weird and wonderful symptoms too. Is the rash internal or external? No diagnoses can be made here, but we can throw a few ideas around. My mind already has one buzzing around, so if you can be a little more clear - I know it's embarrassing - on where exactly it is, inside or outside, then maybe we might be able to help.
Take care
goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
It is embarrasing!! I even put up with it a lot of times because I hate to go to the doctor for that end!!! lol It is on the outside, sorta itches, swells, skin turns grey then it will peel off and be okay for awhile. Of course when this is going on I have to wear lose clothing for it is amost unbareable. Any information will be greatly appreciated.
Sorry, I know it's embarrassing. Thing is it sounds quite familiar. Just my input on this, not from a medical viewpint of course, just as a person with these horrid lumps and bumps that sounds so like yours.
If you look into the one I have - Hidradenitis Suppurativa - this might give you more information.
As I say only my own ideas on this. I really did suffer for just over 10 years with no help from my doctors, until I met an absolutely superb dermatologist about 3 years ago and he diagnosed this at the first appointment.
Good luck and take care
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Hi. Dr. Wallace writes in his hardcover about mucosal ulcerations, which can affect mouth and nose, and in rare cases, vaginal area. (Not sure if this is quite the same, though...?)
I had external sores 2-3 times yearly in the 5 or so years before being Dx'ed. But by that time I was also battling various urinary/kidney troubles (forming grit, frequency, etc.) among all the other weird things going on.
I never did find out the underlying cause. Ob/Gyn presribed a topical called Lotrosone (spelling?) This was only one of, oh, about "umpteen" things that stopped happening to me after starting on Plaquenil---so one really has to wonder if it was lupus-related. Anyway, good luck! Vee
No, the Lotrosone was for (ahem) another body area entirely.
I didn't get facial rashes. Instead, I had "papules" for 4+ years, on arms & torso. Then for another 4+ years, the papules would reappear then "morph" into circles with clear centers. Dx? A subset of S:LE called "subacute cutaneous LE" (abbreviated SCLE). I was ANA-negative but positive for anti-Ro, which apparently happens as much as 1/3 of the time with SCLE (unlike the stats for SLE). I scored a "4" on the "4 of 11" criteria.
SCLE rashes are apparently "notoriously resistant" to topicals [to quote Dr. Daniel Wallace]. Before they knew what I ahd, I was given all sorts of expensive OTHER topicals to try. None of them worked one whit.
Among other problems, I had urinary problems during the big build-up: frequency, urgency, pain, etc., but tested mostly negative for UTI's. My urologist toyed with testing for interstitial cystitis but didn't. The two problems occurred simultaneously, now that I think of it: urinary agony & rash-like agony.
But everytime I think I alone had bizarro things, people here set me straight! Some group we've got, YES?! Best wishes & hope you're doing well, Vee
Thank you all so much for your input! I am going to change my GYN and maybe another one will take more of an interest. Why do all doctors think we are just complaining women? That is what I got for years before I just got so bad I could hardly function anymore. I finally told the doctor that I didn't think I was going to be around for much longer unless he found out what was going on. He finally sent me to a rheumatologist and after I can't remember how many years I was finally told I had Lupus and Sjogrens and put on Plaquenil and Feldene and I feel so much better, but still have the skin flare ups. Especially from the sun. I just didn't know whether this embarrassing rash is Lupus related. Thanks again, it is good to have a place to talk to someone that has been there!!!
Watoozie, About SUN... Much as I hate to say this, because many of us long to be in the sun---DON'T! You should probably take strong precautions, e.g., avoid midday sun, usie a 30+ or better block, wear long sleeves & trousers, wear hat with dense weave & big brim, etc.
i.e., BUMMER. I hate it, but avoidance & blocking have helped me a lot.
short post for me as I just had foot surgery this morning and am a little out of it. Sorry for the spelling and typos......Anyway, I hav SLE, discoid cutainous Lupus and am having a bad flare up. My Dr ordered topical Taclonex 0.005%. The tube reads Calciprotriene 0.005% and dipropionate 0.064%. I believe this is a steriod with vit D? I'ts a new med, my pharmacy actually had to order it. Can someone help a girl out here? I am too tired and sleepy to do a search. I was dx'd 10 years ago, been on everything, Enbril, oral steriods and plaquinil. You name it. I had a couple of skin biopseys and labs done and I am waiting on the results. I'll try to post more later when I am more clear headed. If you have any questions, just ask. Thanks and I will keep you all in my daily prayers.Edited to say sorry for hyjacking your post. I am just not with it righ now. I will try to post a new thread.
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Never be afraid to try something new.
Remember that a lone amateur built the Ark.
A large group of professionals built the Titanic
Best wishes & hope you're doing well, Vee
